I’m not really sure if this post is about me or my daughter! Maybe a little bit of both. Age is a state of mind and I definitely don’t feel old enough to have a child out of high school. But, here we are, planning for her going to college this fall. JuneBug is heading to my alma mater and I feel like it was just yesterday my parents were moving me into my first dorm room.
The Class That Made History
With the pandemic chaos of the spring, everything a high school senior should get to experience was thrown out the window. As PTO president, I went from being handed a well oiled machine to, well, something I now describe with some explicit language!
One thing became very clear as we shifted gears and planned for new ways to celebrate our seniors.
This class was born to make history.
The class of 2020, for the most part, was born into a 9/11 world and 18 years later they graduated during a pandemic.
I truly believe the children are our future (cue Whitney) and I can’t wait to see the class of 2020 take the world by storm.
Celebrating My Senior
Domestic Deadline, for the most part, is about projects and other things that side track me from basic household things… like cleaning.
But, so many of those projects involve my family. So I figured it was only right that I share her accomplishments.
JuneBug’s greatest accomplishment, to me, aren’t her grades or sports or her volunteer hours or any of the many things most kids her age have done.
Long Road
High school wasn’t an easy road for JuneBug. The actual course work was never the problem. Her health has been the biggest struggle.
Ten years ago, in the third grade, she passed out in school while waiting to purchase her lunch. Like any concerned mom would, I took her to the doctor.
Our fabulous pediatrician agreed that passing out randomly wasn’t normal, especially since it happened a few times. We began meeting with specialists to rule out any major problems. First stop was the cardiologist.
But I was never overly concerned. JuneBug had shown signs of anxiety from a very young age. Having a family and personal history with depression and anxiety, I felt that we weren’t dealing with anything life threatening. Yes, depression can be life threatening, but beginning early and teaching her ways to manage was certainly possible.
Cardiology gave her a clean bill of health. As did neurology a few year later.
Passing out didn’t always accompany her “episodes” as we began to call them. Eliminating artificial food coloring from her diet removed the “banshee” episodes that included rage.
Working with a counselor she really clicked with made a huge difference and helped her learn some excellent coping strategies. Eventually, however, we did have to move towards medication as she got older.
Chronic sinus infections, several bouts of pneumonia over the years, and extreme dehydration even as she guzzled down water continued to plague JuneBug. Joint and muscle injuries were a constant problem.
Every illness JuneBug had that her siblings had took two to three times as long to recover from. Medication helped, but I began to wonder if there was something more to this.
Then, one day last fall, when she could barely muster the energy to get to school, let alone make it through the day, her therapist suggested we have her tested for POTS.
Next, a nurse during an emergency room visit suggested it.
Thankfully, POTS was something we had heard of. Postural Orthostatic Tachycardia Syndrome. Unfortunately, we know a friend with this silent condition.
Correct Diagnosis
We quickly learned that unless a doctor is looking for POTS, they won’t find it unless it’s caught in the moment. A simple tilt-table test was all it took.
Her new cardiologist is amazing and has set her up with additional doctors she works with to handle different aspects of this.
We aren’t the norm in the POTS world. Many patients take years to get to a manageable stage. JuneBug’s medical history has led to her interest in studying nursing.
She also was relieved to know there were things she could do to help her manage her symptoms. That it wasn’t “all in her head” (we both still advocate for being more open about mental illness, but that’s a separate topic). Yes, she did have a major depressive episode at one point, but even with the medicine and management techniques she was using, her episodes were still not under control.
Managing Symptoms
Having already tried dietary and lifestyle changes for all my children and myself for our various, we were happy to have a prescription to start her on immediately.
And for once, it didn’t take months of trial and error to find the right one. Adjustments may need to be made down the line, but we immediately saw positive results from the first beta blocker she was put on.
JuneBug and I jumped in to tracking symptoms and lifestyle changes that would benefit her.
Correction… I jumped into it and quickly proved to her it was very helpful to help manage her symptoms and improve her quality of life.
When you feel out of control, the best way to gain control is focus on what you can control.
Aside from daily medication, supplements and vitamins, we took control of her sodium, hydration and physical fitness.
For a POTSie, learning the right physical fitness requirements is essential. Between her sports medicine doctor and physical therapist, both knowledgeable in POTS she soon learned how valuable keeping her body conditioned appropriately is.
In just a few short months, JuneBug’s quality of life has drastically improved. Covid craziness aside, I’m no longer worried about her going off to college and being on her own.
Tools of the Trade
This is a topic I could go on about, even though we are still learning about POTS, I feel her story could help others who may be dealing with POTS, known or unknown.
I’m encouraging her to share her story, hopefully, she will do more of that soon. Maybe I will share more over time as this is really a condensed version of the past ten years.
But I would like to share some of the “tools” we have found helpful for helping her manage her symptoms, in case someone might be looking for some guidance. Yes, these are affiliate links, but it doesn’t change the cost to you. Anything POTS related that I earn via Domestic Deadline is actually going to be going towards her college expenses. It’s part of how I’m encouraging her to share her story.
For many years, I have divided up meds and vitamins into weekly containers for each family member. At a glance I can double check which child has or has not taken theirs. Plus, I personally need the containers to track myself.
Our preference is containers for with morning and night slots that can separate. This way if someone is going to be gone for a few days, only the days they need go with them.
Because we also use some vitamins in gummy form, they need to have plenty of space. Additionally, each family members needs to be different so there is less chance of mixing up the containers. JuneBug’s and mine used to be very similar, thankfully our prescriptions at the time were also similar and it was me that made the mistake and took her pills!
So far Bug Hull products have been superior to pillboxes we have tried. My favorite two are these two:
POTSies need increased sodium. It didn’t take long to realized JuneBug needed to add salt pills to her supplements and we moved her to a three times a day container.
Healthy eating has always been important to me as well as JuneBug. So adding Ramen Noodles to her diet doesn’t concern me. She and I both now have a FitBit so she can know her heart rate and see the ups and downs throughout the day. Looking for patterns and seeing days she felt best, it didn’t take us long to figure out staying above 6000mg of sodium a day is where she needs to be.
In addition to the salt pills, Liquid IV has made a huge difference. After trying several electrolyte supplements, we found this to be the best for her. When she first started using it, she would add one packet to 20 oz of water, five times a day. Now she still uses a few packets a day, but probably not 5 a day very often. JuneBug knows she will jump back up to five the minute she has hits a rough patch.
Compression leggings and socks also made a world of difference. She couldn’t handle the medical-grade ones and we ended up trying a variety. A selection of fun socks, tights for under her jeans and leggings thick enough to wear as pants with pockets gave her a variety of options depending on the day.
Now that it’s warm, she doesn’t want to wear full leggings all the time, but since she has been doing her conditioning, she is doing pretty well. Some POTSies struggle with maintaining body temperature and often find summer heat to be the worst. Winter seems to be JuneBug’s worst time of year.
Warm days where she feels she needs some extra support from the compression she wears calf sleeves and or compression shorts. Options with pockets seemed to be the trick for her not feeling like they look out of style. Besides, everything should have pockets!
Conditioning
Working with a physical therapist knowledgeable in POTS is another way I feel we were able to see such a drastic improvement in JuneBug in a shorter time. Initially we went to the office twice a week and she was also given exercises to do at home with little equipment.
Sometimes it was as simple as walking, initially with me by her side, and building up the distance she could walk. When Covid hit and everything shut down, walking was easy enough but her appointments became virtual, so we got creative.
A portable desk bike, that matches the walls in her room, worked out nicely for her.
There are tons of options of these small bikes available, many with even better features. I selected this version because it folds up and wasn’t too expensive. My theory was, I didn’t want to invest in something she might fight me to use and then just take up space.
Since she can sit the bike on a table and work her arms, there is versatility in it’s use. She does use it regularly and already plans on taking it to college with her.
A set of resistance bands, a yoga strap and yoga mat, and JuneBug can do her exercises daily. She’s already experienced how fast her body will de-condition if she doesn’t follow her plan daily.
All of these things will go with her to college. The school has a great recreation facility, but we don’t know yet how Covid will affect its use. I’ve already added a microfiber towel designed to go over a yoga mat to her “college pile.” Something she can take with her to a yoga class and then wash before the next class.
Grateful
We know that POTS often times takes a long time to diagnose and most can take a very long time, even years, to get back to a “normal” life. But after talking to parents of other patients, her doctors and a nutritionist who is knowledgeable in POTS, I feel our approach and tracking things like water and sodium and making lifestyle changes like compression clothing and daily conditioning has helped her get to a maintenance level at a faster pace.
Each POTS patient is different and has to find what’s right for them. Linking JuneBug’s Fitbit to Spark People helped us track sodium, hydration, exercises, etc. We were able to look back and see, if she was having a bad day, if she might have been low on sodium, skipped a workout or something that might have caused the setback.
I’m grateful we found the right doctors at the right time. That we had the ability to invest and make the changes we did for her (I had just gotten her new non-compression leggings and short socks!).
Neither of us is an expert in POTS, but we are learning how to manage it and she is still living her life to the fullest.
Most of all, I’m thankful she is on track. Healthy and happy. And ready to tackle the next chapter of her life.
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